Every
Voice

Matters.

 

Every
Voice

Matters.

 

Every
Voice

Matters.

Fast Forward for RARE Practice Your Pitch Webinar
July 8th, 2:00 p.m. – 3:30 p.m. ET
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Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.

Register for Rare Disease Week on Capitol Hill, then register for the Fast Forward for RARE webinar. We hope to see you there!

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Thank you to Ipsen for sponsoring the Fast Forward for RARE Webinar Training!

listening
The fight against rare diseases starts with listening to the millions of people who live with these conditions every day. Their personal experiences can inspire change, improve care, and lead to new discoveries.
Listen Here!
Stories With Impact
Every voice and every experience is unique. By sharing our stories, we represent a collective strength and create a groundswell that motivates change.
Play Video

Every voice matters!

Check out the videos below to hear more about the issues important to the rare disease community.

Come Practice Your Pitch at Fast Forward for RARE
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Stop
  • Visit the Fast Forward for RARE video suite at an upcoming rare disease or patient conference
record
Record
  • Share your story on camera
  • Get immediate feedback and tips
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Fast Forward for RARE
  • Apply what you learn to inspire action
    • Share your story to raise awareness
    • Speak with your legislators to advocate for policy change
  • Receive a digital copy of your video and photo to share

Personalized Coaching

Our team of communication specialists is eager to provide you with the tools to feel prepared and comfortable advocating for your rare disease community.

Britta Dornan
Britta Dornan
Senior Director of Communications and Marketing
Shannon von Felden
Shannon von Felden
RDLA Program Director
Katelyn Laws
Katelyn Laws
RDLA Program Coordinator
Chris Smith
Chris Smith
President and CEO
Katie Burns
Katie Burns
Vice President
women smiling
Kylie Barber
Medical Foods Policy Associate
Lisa Savitt
Lisa Savitt
Account Director
Alex Van Rees
Alex Van Rees
Senior Director of Client Service
Dylan Simon
Dylan Simon
Newborn Screening and Diagnostics Policy Manager
Adrian Palau-Tejeda
Adrian Palau-Tejeda
Diversity Inclusion Advocacy Fellow